A shot in the dark...?
 

Okay, so a while back Cara invited me to hang out on this forum for a while. Her regard for all of you who "live" here seems to be very great indeed, and after several weeks of lurking I tend to agree.

The problem is that my problem is very unlikely to be caused by GS or CD. But since it began as an abdominal problem, and is largely still so, I am hoping that maybe some of you wise people might have heard or come across a problem such as mine.

My condition began with a VERY small irritation in my left side. It felt precisely like a small splinter was wedged inside my abdomen, and when I moved or twisted my torso in certain ways, I could feel a pricking sensation. After about a month a knot of pain formed around the area, and that's when I finally went to the doc. Blood work showed that I had a high WBC, and slightly elevated liver enzymes, so he diagnosed me with DVT and put me on antibiotics. And of course that didn't work.

Over time the pain in my side grew, but for a year it remained in my left side. Then I began having GI complications, and developed FMS. Slowly and cruelly, this demon inside me has grown and spread, and no one can find it's cause. I've had virtually every scan and procedure including two colonoscopies and a laparoscopy. Recently the pain spread down my leg to my ankle, which has brought up the question of whether it might be some rare "muscle-wasting disease". Since virtually every organ of the body except for the brain has muscle in it, this condition could theoretically cause all of my symptoms.

But the center of the problem is still located in my abdomen, and I feel that the answer lies there. That's where the thread began, and where it still resides even when the other pains recede for a while. I am very worried because it's becoming increasingly evident that this is a slowly progressive condition, and there's no telling when or where it might stop. I don't think I could survive this pain if it were to consume my whole body.

I've seen at least two of almost every kind of specialist there is, and am still seeing them on a regular basis. But all of them seem at a total loss. If there is anyone here who has heard of a condition in any way similar to mine, I will thank you until my dying day if you would share it with me. As you can probably imagine, I have studied medicine quite diligently for the past few years, and have become quite knowledgeable, though apparently not knowledgeable enough.

Please, if there is anyone who thinks they might have a clue, no matter how insignificant it might seem, will you share it with me??? Thank you very much for reading all this.

Sincerely thankful,
Idealist

I doubt I can help much...but I am wondering where in your left side the pain was? I wonder if the pancreas might be involved?

What blood work have they run? Besides the WBC and liver enzymes?

Have you done any allergy testing or enterolab? Do you have abdominal/gi symptoms beyond pain?

And are you female? Endometriosis comes to mind (the theory that it might be growing on my colon has been tossed around, and that would fit your symptoms somewhat.)

What about parasites? (just grasping at straws...the blood count sounds like an infection somewhere. A parasite could cause an infection, or mimic one?)

I wouldn't be quick to rule out gluten or other food intolerances. I have met so many people online who discover that seemingly unrelated conditions are cured when they remove some common food from their diet.

Elimination diet. I'm sure you've seen that thread as I just bumped it yesterday. We tried it because it wasn't invasive. We honestly did not expect it to work at all!! I can still recall my surprise when we saw our first really clear reaction (almost seizure-like) upon reintroducing oats. I was SO shocked... esp. at oats... of all things. I thought that if we saw something, it would be eggs or nuts or something that everybody talks about.

That's saying nothing about things that we thought had nothing to do, at all, with food reaction. (joint stiffness, muscle aches, excess ear wax, etc.)

Other foods that contribute in our house are: refined sugar, complex sugar (starch), whole grains, dairy, etc.

Now, gut pain... I remember a lady on the obt who had something like that. She was quite active and so the 'pain in her side' really bothered her. Her screen-name was bikerblue. If I remember correctly, for a long time she kept saying that she thought it was corn and would take it out but I don't think she made sure to avoid it right down to the last molecule. I believe she finally did and was finally pain free... but it took her a long time to work up enough 'disgust' to finally 'really be strict' about it. I could be wrong and hopefully some oldies will correct me if I'm wrong, but I think that was how her story went. Corn is a toughy and means that pretty much all pre-packaged food is out.

So back to where I began... elimation diet.

HTH

My 13 year old is going through tummy issues. His are most likely going to resolve with gall bladder surgery.

But the point where your pain started and the liver and WBC numbers sound just like what the doc thought would indicate pancreatitis. Odd.

Two things to look at that are just insane and I had never heard of before I ran across them. Arthritis. There is some kind of arthritis that effects the stomach. (I don't know more than that-I would have to find you something in one of the medical journals) The other is MS. My aunt has MS and it originated in her abdomin, which caused horrible, terrible pain and all sorts of tummy troubles. As she has aged, the MS has progressed to involve limbs and such.

Just 2 total shots in the dark. Did any of the docs pull ANNa's or RA's. Those results could rule out Lupus or Rheumatoid Arthritis.

Hi Idealist~

I wish we hadn't lost contact with so many people who used to post with our group because the collective experience was so broad.

Kim, I do remember bikerblue/Tami has having that longstanding left sided pain, which sent her to the ER a couple of times, and lots of exploratory scopes, etc. And, I also remember when she finally really gave up corn (in addition to gluten), she did finally improve. I think it was a year or two before she improved. I am also trying to remember her other symptoms...I know she could not 'bike' for some time due to her ongoing symptoms/pain.

Al is still around, and hopefully he will share his experience. I'm pretty sure he has tangoed with diverticulitis. He tried a gluten free diet on a can't loose premise in hope that it might help his neuropathy symptoms. Maybe he will have some thoughts for you.

Whether gluten or other food related or not, I think you are probably right that your problems may all come back to the gut. It is the one big picture I have gotten out of hanging in these forums over many years... many neurological and neuromuscular symptoms stem from problems coming back to the gut.

So.. I agree that intestinal health is a good focus while your doctors continue to search for other things. Among the things to be explored are food sensitivities (really... this can be a hidden answer for many symptoms you'd never dream of). Then there is nutritional deficiency which can cause many neurological/ neuromuscular symptoms (which may be related to malabsorption for any number of reasons). And then there is overall gut health... might you have h. pylori? (assuming this has been ruled out by biopsy/ blood tests?) yeast overgrowth? bacterial overgrowth? other parasite?

Have you ever tried seeing an integrative medicine type doctor? If you haven't yet it might be one last avenue to consider. These doctors are usually MD's (I'd look for an MD)...whose training or experience has given them a broader approach. I took my teen daughter to a DAN! doctor several years back when I suspected the gluten and nutritional issues that mainstream doctors were discounting, as well as having tested positive for pyroluria, another controversial condition among mainstream medicine. [as a way shot in the dark, one of the symptoms sometimes listed for pyroluria is left sided pain..but I don't know how it is supposedly related, or if you have any of the other symptoms that would make that testing worthwhile. There is a page on pyroluria in the gluten file if you want to know more.]

An integrative medicine doctor would likely take you down the path of thorough stool analysis (they do much more testing than our mainstream doctors...looking for bacterial imbalances, etc), immunological testing, nutritional testing, and likely food sensitivity testing. It would be best to have a personal recommendation for one of these doctors, but these links might give you a starting place. You could also contact a local Autism group or a local health store for recommendations. Integrative medicine doctors generally do a lot of testing, and will certainly recommend supplements for nutrition and gut health, etc. I am happy we took my daughter to the DAN! doctor (she does not have autism, but the gut and immune system issues were there)... and it was so refreshing to see a doctor light years ahead. (Although to be honest... he was a little too outside the box for me using every alternative treatment one could think of (homeopathy, vibrational medicine, even offered health psyschics~ things I don't absolutely discount, but might feel a little iffy about)... but he also utilized standard blood testing for immune system profile, standard chemistry profiles, etc, ... and looked for all the things I'd been wondering about..without having to even ask him. He definitely knew and understood his biochemistry and how to interpret all the results.

Anyway, I'd travel this road before giving up~

DAN Doctor List

Integrative Medicine Doctors

American College for Advancement in Medicine (ACAM)



I've probably already offered this up~ but in case I didn't~ have you seen the Fibromyalgia page in TGF? http://jccglutenfree.googlepages.com...atiguesyndrome


Cara

a real shot in the dark but I wonder if it could be a muscle in spasm probably the psoas muscle ......... maybe try and find a good trigger point therapist or chiropractor

I tried some googling about psoas mucle but it has become a bit trendy to refer to it in yoga and pilates and I couldnt find a good precise site for you in the time I have now

but several years ago after reading a post on OBT about stomach pain being related to the psoas I found lots of info about how it can cause all sorts of problems and was able to trace my own problem to an exercise I was doing agrevating my psoas muscle

good luck
koz

I'm not sure what DVT (diverticultis) or FMS (fibromyalga?) are, but here are some suggestions. Sounds like the pain is pretty specific to one area. I have the same questions - where on the left side of the abdomen? Is it upper, mid, or lower abdomen? Have you considered all the organs that are on the left side of the abdomen - stomach, spleen, pancreas, & decending colon? The high WBC made me think of a spleen problem, but it also could be in response to fighting off an intestinal pathogen. One course of antibiotics may not work for certain parasites and bacteria. If it's lower abdomen, consider left ovary (cysts) or uterus (fibroids, endometriosis).

I find it helpful to work with a combination of both alternative and traditional western medical doctors. For example, I was having pain on my left abdomen and central upper abdomen. My chiropractor narrowed it down to my transverse and decending colon. Because I had travelled out of country twice this year, I focused on parasite and pathogen testing. I had to have about 4 or 5 tests (combo of stool and blood antigen testing for parasites) and two doctors before I found out what it was. If you have done any travelling outside of this country, you should do every parasite and pathogen test there is before giving up on that. Here is one story of a woman who had a very difficult time getting diagnosed, then properly treated for her parasite:

http://www.badbugs.org/index.html

I ended up having bacterial dysbiosis. Somewhere, there is a thread about it that I posted in October about it with this title. I ended up being diagnosed through a doctor of oriental medicine and had my lab tests done through Diagnos-Techs. I did a bunch of parasite and pathogen testing through my local hospital, but what they tested for was limited, and I really had to ask specifically what they were testing for and what exactly my doctor ordered. The local hospital lab did not test for certain parasites and bacteria, so they missed the bacterial overgrowth of bad bacterial that I had.

I also had testing done for delayed food allergies. Again, I had to ask for these, but my GP was willing to order the tests. It was a blood test that tested for IgG antibodies to 90 foods. Once I found out what the offending foods were, I eliminated them and felt better. I'm pretty sure I had leaky gut syndrome. I've been working with my DOM/acupuncturist on this. I've been happy with my results so far. I don't know which came first; the leaky gut syndrome or the bacterial overgrowth. I had problems before I travelled internationally, and my digestive problems got worse after I had surgery this April to remove uterine fibroids. I suspect that the massive quantities of ibuprofen I was taking was damaging my intestines. Leaky gut syndrome, bacterial dysbiosis, antibiotic use, and ibuprofen use are all connected.

I didn't end up having a colonoscopy because I had already had surgery this year for uterine fibroids and I didn't want another invasive procedure. I was happy that I persisted in working with my alternative and western doctors to find out the problems.

Are you taking probiotics? If not, make sure you get all your testing done for parasites and pathogens before you start taking them. Then, you can start the probiotics, which is a good idea if you have taken antibiotics.

Claire

Gee, golly, and wow! You guys really know your stuff! Thank you very much for inviting me here, Cara.

First, I probably should mention that I'm a guy, forty-four years old. The point where the irritation first started was just inside and an inch or so below the top of my left hipbone. The fact that it start so small, has been so persistent, and has continuously spread over the years keeps making me think that it has to be some kind of infection, or a progressive disease.

It's very interesting that you mention h. pylori, Cara, because just a few months ago I had an endoscopy which showed an extremely bad case of it in my stomach. The GI said he had never seen any worse, as the entire lining of my stomach was pretty much eaten away. But they have filed this as just a complication. I was given a ten-day regimen of strong ABs and they haven't retested for it since. Is it possible for h. pylori to spread outside the stomach?

Several times I've been misdiagnosed with diverticulitis, but after two colonoscopies, four CT scans, and three MRIs they have pretty much ruled that out. Plus the GE says that the center of pain is in the wrong place.

Kozz, I do have periodic problems with pain and seizing of the psoas muscle, which makes walking and maintaining my balance quite painful. But again, no one can figure out why. I develop pressure points that come and go.

As far a GI involvement goes, it seems mostly to affect my lower GI tract. Except for the ulcers from the h. pylori, I've had very little stomach problems. But three times so far I've exerienced flares where my whole lower gut seems to just "die". It feels like a lead weight inside of me, and there is no sign of life or activity. No gurgling or rumbling or anything. During these times it is very hard for me to eat, and anything I consume comes back up a few hours later. It's a very frightening experience. The first time I went to the ER. The second time I went to my doctor. The thrid time I just toughed it out at home. It lasts for about ten days, and makes me thoroughly miserable. No sleep, awful sweats and chills, extreme abdominal pain and discomfort.

I've had so many strange symptoms, and they always seem to last for three to four weeks before disappearing. Muscle spasms of the abdomen. Once I had body-wide muscle spasms that occurred every three to four seconds. It affected every muscle in my body, but it was only minor twitching, so no pain or real discomfort.

I have had so much bloodwork done that I really can't remember it all. I've had CTs, MRIs, x-rays, a complete bone scan, an EEG, psychological evaluations, a bone core biopsy, bone marrow aspiration, two colonoscopies, barium enema, an endoscopy, a laparoscopy, and have been used as a guinea pig for dozens of different meds, none of which have helped.

The truth is that anxiety is starting to get the better part of me. This just keeps getting worse, with no end in sight. It seems to me that there is something in my abdomen in a very strategic location. It aggravates my psoas muscle, abdominal and back muscles, my colon very often and my lower GI periodically. When it first began I would actually have abdominal spasms on my left side that felt exactly like my wife's belly did when she was pregnant and the baby started kicking. I could lay my hand across the left side of my abdomen at night and feel them.

The pain that I feel is most sensitive to pressure, motion and vibration. I can poke my side with my finger and it barely hurts. But if I push lightly with the finger and hold it there for a minute, the demon starts waking up.

I've studied the problem so hard for so long that my head is awash with too much data. I can't look at it objectively any longer. Right now I'm scheduled to see another rheumy and neuro in January, and if that shows nothing they are considering referring me to the Mayo Clinic in Illinois. That sounds fine on the surface, but what if I go there and they can't find the problem, either? I think I would go insane!

So to wrap this up, what I personally feel is that there is some kind of object inside of my left abdomen that is aggravating everything within its reach. Except that during this last flare, the pain went all the way down to my ankle. These flares are so agonizing that I'm driving myself crazy anticipating them every time I feel a twinge. And I live in dread that the condition might spread to the right side of my body.

Every single test I've had has come back PERFECT. The docs say I have the body of thirty-year-old. But if so, it's a very unhappy thirty-year-old.
I'm so sorry this post is so long, but I'm hoping desperately that you smart folks can help me come up with an avenue that I have explored already. Something I haven't though of. Bless you all for your help in trying!

Oh, BTW. What is a DAN doctor? And I've never heard of probiotics before. What is their purpose?

Thank you all very, very much!

Idealist

????
 

Have you been evaluated for prostatitis?
You don't mention this possibility. Have you seen a urologist?

http://www.urologychannel.com/prosta...symptoms.shtml

Enlarged lymph nodes in the groin can press on nerves, and radiate to the
leg. Although prostate problems often refer to the lower back, there could
be infection still present. You did have elevated white count to begin with.

Other sources of groin pain:
http://www.nlm.nih.gov/medlineplus/e...cle/003111.htm
Kidney stones can also get stuck in the ureter, and cause lower abdominal pain.

When ileus occurs, (this is when parestalsis -movement of the GI tract stops)
the most typical result is bloating, gas.

What is unclear from both of your posts, is the exact character of the GI problem. Do you have bloating? Gas? on a daily basis, which gets worse with attacks? Do you have fast transit, or typically constipation? Since you had that H.pylori...did you have pain in the upper abdomen with that? Heartburn?
Do you have diarrhea? especially after eating certain foods? Do you have cramps after eating? Do you vomit frequently? If you take opiates for pain, these will constipate you and perhaps conceal the real symptoms.

Many people after using antibiotics, require some Probiotic support. Killing off the beneficial bacteria that keep the bowel healthy, allows nasty ones to take over. Probiotics provide replacement of the good guys. Also eating a quality yogurt daily can help. Activia by Dannon, is pretty good...you should try that.
It is possible you have more than one thing going on with you. Most medical things are not so cut and dried.. that one diagnosis covers all symptoms.

I would suggest you use Lactaid whenever consuming diary. Many people can become lactose intolerant with no warning.

Since doing an elimination diet is non invasive, I agree here with others
that you should try one.
The big offenders are gluten, dairy, soy, corn, citrus. (I did a citrus elimination last spring, and discovered my arthritis improved dramatically--I no longer have daily pain in my knees). So your offender may be difficult to pinpoint.
A handy rule of thumb is to list all foods you crave or favor. In that list may be the culprit. We tend to crave that which is causing intolerance.

This is a challenge for you, and requires some commitment. I'd also suggest you keep a journal daily to log what works and does not. That helps tremendously.

This is going to sound so stupid, but did any of these docs check you for hernias? My dad and my brother both suffered from them. My dad's was abdominal and HUGE. He just ignored it for years until the pain made him do something about it. My brothers was sub inguial and he described pain like yours. Took the docs months to pin point what the pain was from and then to find out exactly where is was. It was kinda hiding down there. (p.m. me if I am being too vage. It's a more personal topic than I think you would like me to get into on a public forum.)

DAN! stands for Defeat Autism Now, although many of these doctors see other patients as well. The one we saw also treats adults and a wide range of conditions such as~ http://www.pathwaysmed.com/menu/serv...rvices100.html

I cannot give a thumbs on all the doctors you'll find listed on the links above... because I don't know them... but they may look for and consider things and offer treatments that your other doctors haven't thought of. You most likely won't find any of these guys on your insurance plans if you must stick to a list, but if you are free to choose your own doctors then they should be covered.

Cara

Hi Ideal,

Sorry to hear you're having this ongoing problem with no answers from the medical community. Been there...done that...ain't no fun.


Yup Cara's right, I did/do tango with diverticulosis/itis. I see that you have had numerous tests to rule that out. I feel the GI doc missed the diverticulae during a colonoscopy BEFORE I had a major attack. It was dx'ed by a flexsig procedure done by a primary care doc. Grrrrrrr

Do you have lower back issues? If you stated that previously - sorry I missed it. I have that same feeling at times. I think always baffled the docs with my back pain. It's very specific, I move just in the right manor and will feel pain. I often have a hard time trying to figure out if my left side pain is truly coming from the front [diverticulitis]- or if it just "feels like" it's coming from front but is originating from the back. I know when I aggravate my back, I feel it on the front left side (around the hipbone bone) too. My left lower back is where my problem lies - I have annular tears in the discs surface. A lower back problem could explain the pain shooting down the legs. Back problems can be hard to dx unless you get someone that is well versed in that.

I have neurological issues too. Many of them cleared up when I went GF, some of them have not. I still have peripheral neuropathy in my hands, feet and legs [plus a few scattered spots]. Disappointingly, my PN has not cleared with being GF. I do notice changes in my PN with dairy.

I wish you well in your Knowledge Quest. Keep searching for answers...

Thanks again, everyone. Y'all are every bit as awesome as Cara promised you'd be. I wish I had more specific symptoms to write, because I'm sure it might help. But everything about this illness has been so erratic and confusing. My GE complications can run the gamut from mild tenderness to extesive pain and swelling. Sometimes I have diahrrea for a month, and then it just stops for two months, all with no obvious reason. I've kept diaries, tried diets, starved myself. It's just a very strange disease, and it keeps on progressing. If it ever gets into the right side of my body I'm afraid that the pain will push me over the edge.

I have one last question, though, if it rings any bells in anyone. Have any of you heard of a muscle-wasting illness that began in the abdomen and then spread outward from there?

Hi Idealist,

I know I was overwhelmed when I was trying to figure out what was wrong with my digestion. I think the best way to manage it is to make a list of what you have been tested for and another list of what possible things you should be tested for. I had one doctor who looked at what I had been tested for and saw it as a good thing that certain things could be ruled out. I was just frustrated, and I saw the wisdom in at least knowing what I didn't have!

I'm wondering about the suggestions you have been given, because you did not indicate if some of these things had been tested for and ruled out, such as hernia, parasites, etc. I guess I'm still wondering about the parasites/pathogens because they can be cyclical in nature.

Probiotics are living organisms that are beneficial for your digestion. Your digestive system has many different kinds of bacteria that help you digest your food. There are certain types of bacteria that are not beneficial that also live in your gut, and if they get out of balance, they can wreak havoc with your digestion. When you take antibiotics orally, they destroy all the bacteria in your gut, good and bad. Because antibiotics do not distinguish between benefical and pathogenic bacteria, you need to replentish the good bacterial through probiotic supplements, or the pathogenic bacteria can become dominant in your gut again. Pathogenic bacteria can overpopulate in your small intestines or your large intestines.

Also, it's a good idea to be tested for Candida if you haven't already. This is a pretty common problem, especially if you have a history of antibiotic use. My GP did not test me for this, and I thought it was a major oversight. I didn't end up having Candida, but I'd rather be tested for the "simple" things. Sometimes, I think doctors order expensive and invasive tests when a simple stool test will find the answer.

Also, it seems like you have yet to be tested for food intolerances? Like someone else mentioned, there could be multiple things going on with you right now. It's good to make a list of all these things and start checking them off as you get tested for them.

Claire

There is Whipples disease, a gastrointestinal thing that can cause systemic and neurologic symptoms. I don't know much about it, but it is discussed in an article I have on the neurological manifestations of gastrointestinal disease. It is a rod shaped bacterium, I think.

Long shot? I don't know enough about it or your symtpoms to make a guess~
http://jnnp.bmj.com/cgi/content/full/68/1/2

Cara

Oh yeah, Mystery Diagnosis did a show on a man with that. He was very secretive about his health issues and was embarassed by his symptoms so his doctors had a devil of a time helping him. It was a shame since it progressed quite far.

Follow up on ALL of the great advice already given! Lots of excellent ideas, already shared with you!

Several more questions, as food for thought:

1) Have you been checked for "atypical" APPENDICITIS? (which sometimes can hide from many docs)

2) What are all MEDICATIONS that you took & are taking?--by mouth, by intramuscular injection, by intravenous injection, topically on the skin, on the scalp, etc. --both prescribed and over the counter, vaccinations, herbs, supplements (thinking of possible contamination if from out of the country, etc.) , Chinese herbs, etc. (wondering about possible adverse side effects of any of these)

a) any acid blockers? (these cause nerve damage, to either peripheral nerves &/or to central nervous system, by preventing absorption of dietary Vitamin B-12. HAVE YOU HAD YOUR B-12 BLOOD LEVEL MEASURED? IF YES, WHAT WAS THE RESULT? OTHERS KNOW MORE ABOUT THIS, INCLUDING ROSE AND MRS. DOUBTFYRE, ETC.

b) "statins" (cholesterol lowering drugs) can cause "rhabdomyolysis" which is MUSCLE DESTRUCTION, that can lead to kidney damage (Lipitor is a statin, for example).

3) What other medical conditions do you have? (with or without taking meds for them)

4) What was different, around the time this first started? (work location, home location, air quality, diet, etc.):

a) What kind of work do you do? (in case of occupational connection, regarding ergonomics, or toxic exposure, etc.)

5) Have you had any:

a) accidents/injuries

b) operations/surgeries,

c) dental procedures, such as root canals, etc.,

d) silicone exposure?

e) heavy metal exposure? (Chelation therapy can help with this)

6) What is the source of your drinking water supply? (thinking of water borne infections possible, &/or problems with water treatment chemical overloading)

7) Have you been checked for possible Arnold-Chiari Malformation Syndrome (can be congenital/born with, or acquired, I think)

Carol
http://cantbreathesuspectvcd.com